Hi, my husband has Facioscapulohumeral muscular dystrophy, he has suffered with it his whole life and really struggles to lift things, has pains in his shoulders and is really self concious. I was wondering if anyone knew of anything he could try or if there was any research going into a cure. Thanks. ... See MoreSee Less
Working with local neuromuscular teams to improve local services is one of our top priorities.
Claire Bosanquet from Keyworth and her two sons Tom and Jack, both with Duchenne, helped us to secure additional care advisor support in the East Midlands. She said: “A care advisor is an expert advocate, someone in your corner through all of this, and one of the few people who understands the pressure we are under as a family.”
"James always carries his card on him. He gave the card to the ambulance team – as they were giving him dangerous levels of oxygen. They immediately lowered this – as the paramedics had no knowledge of the risks for people with Duchenne. The resuscitation team who met James at A&E said he would have certainly had a fatal heart attack had the ambulance staff not been given the card.”
Muscular Dystrophy UK has alert cards for 11 different muscle-wasting conditions to ensure people like James Corby who has Duchenne muscular dystrophy (pictured and quoted) receive the emergency care ...